Deepti

My symptoms started around 12 years ago, when I was 28. Excruciating pain while going to the toilet, painful sex, and secondary infertility were just the beginning of what I now know as my endometriosis journey. In hope of answers, I started knocking on the doors of GPs only to be let down, gaslit, and misjudged.

People often assume my experience must have been with a male GP, but unfortunately, that wasn’t the case. Over the years, I’ve realised it’s not about the gender of the doctor; it’s about their knowledge.

After multiple appointments with no respite, I took matters into my own hands and made the decision to go private. Thankfully, the gynaecologist I saw believed me instantly. She performed a diagnostic laparoscopy, confirming stage 3-4 endometriosis. I was 30 years old when I was told that if I wanted to try for another child, I should pursue IVF immediately. Otherwise, their recommendation was a full hysterectomy with the removal of both ovaries.

That appointment was one of the most distressing moments of my life. On one hand, I finally had answers; on the other, I had walked in thinking, "it can't be that bad". After all, most doctors until then hadn’t even believed I had a problem, and to suddenly be told I had such extensive disease was a shock to the system.

By some stroke of luck, I found one of the rare specialists in the UK at the time who performed radical excision surgery. But there was a catch, it was only available privately, and would cost thousands of pounds. It was a price I had to pay to take control of my health. With his help, I was able to preserve all my organs and, for the next eight years, I lived what I call "pain-free."

I say “pain-free” because, while my pelvic pain disappeared, something new emerged, pain in all my joints. I was referred to rheumatologists and underwent every test imaginable, but everything came back negative. No one could explain what was happening. The only solution they could offer me was more painkillers.

The constant comments have made it harder; 'Why haven’t you had a second child?' 'Are you just too focused on your figure?' 'You look fine, nothing’s wrong with you!' and many more such comments have left deep scars. No one truly wants to know what you’re going through; they just want to tell you you’ll be fine when you know you have a chronic illness. Here, I have to give a shout-out to my husband and my son because they have been my biggest supporters.

The ignorance surrounding endometriosis, even within the medical community, has left me exhausted. That’s why I’ve joined Endometriosis UK as a volunteer, I’m fed up with being dismissed. I want to reclaim my story.

I’m now back in the NHS system since 2023 as my flare-ups have returned. My recent MRI confirmed deep infiltrating endometriosis and adenomyosis, making a hysterectomy and second surgery even more complicated.

Some days, I have zero mobility. Other days, I’m dancing at a party (the after effects of which others with endometriosis will know, but it's nice to feel ‘normal’ temporarily). I never know what I’ll wake up to. This uncertainty has affected every aspect of my life.

But I refuse to be silent. My journey isn’t just about pain; it’s about resilience, awareness, and demanding better for those who come after me.

If my story resonates with you, know this; you are not alone. And together, we will keep fighting.

Jenna

After being diagnosed with Endometriosis in 2021, I have felt a calling to spread awareness and to publicise this debilitating condition. Around 8am, 27^th July 2021, the surgeon came into my hospital room very pleased with how the surgery went. They managed to unblock my fallopian tube, which was brilliant news, it had meant all those conversations, late night worries and time spent researching IVF didn’t matter so much now. But the surgeon goes onto explain how there was endometriosis on my bowel and pelvis. At this point, I didn’t know what endometriosis was let alone how to spell it. 9 months later, I’m having my second laparoscopy, this time to remove a 7cm cyst from my left ovary. At this point I’m learning that this is a condition that doesn’t get ‘fixed’ with an operation and certainly won’t go away over night. 

It has now been a few years since my last laparoscopy and I am still learning how to live with this condition, but still as passionate now as I was back then to support others finding ways to live with this condition. My vision for the Manchester support group is to create a safe, welcoming and friendly community where everyone is listened to and feels heard. 

Liss